Living with Postnatal Depression
A Fathers Story
Presented by
Chris Bingley
Charity Registration
Number: 1141638
Where to find this
Why I am here ……
Mums and Dads at Risk
Statistics on postnatal depression show that:
2/3rds of mums will suffer a mood disorder during or after pregnancy:
1 in 2 mums suffer Baby Blues
15% Mums suffer Postnatal Depression
3% Mums suffer Severe Postnatal Depression
1 in 500 Mums suffer Puerperal Psychosis
Maternal OCD
Maternal PTSD
10% Dads who suffer from PND without treatment
50% Mums suffering in silence to afraid to seek help
Based upon 201 ONS Birth Rates
UK
East Midlands
403,888
27,689
121,166
8,307
24,233
1,661
1,616
111
80,778
60,583
5,538
4,153
•
NICE guidelines specify that those who suffer severe postnatal depression should be referred
to a specialist perinatal psychiatrist
– less than 37% of PCTs commissioned specialist services.
•
NICE Guidelines state the preferred treatment for severe PND or Puerperal Psychosis is
hospitalisation in Mother and Baby Units (MBUs)
– less than 91 beds exist with places for a maximum of 593 mums
•
Whilst 10% Dads suffer Postnatal Depression, Dads are not recognised by NICE
– no specialist services are available for Dads either as Sufferers or Carers
Dads and “Significant Others”
Whilst Health Visitors and Midwives are the primary contact for Mums during
pregnancy latest research shows mums are far more likely to turn to their partners for
help and support than to Health Care professionals.
A survey by Netmums and the Royal College of Midwives (Nov 2012) found:
•
Mums mainly (42%) turned to their husband or partner when they first talked about
how they felt with only a third (30%) first mentioned it to a health professional.
•
Only a third of mums (30%) were told about the possibility of depression by their
midwife and only a quarter ((27%) reported being asked how they felt emotionally
during their pregnancy.
•
Nearly three-quarters (74%) of those surveyed said it often took a few weeks or
more likely a few months before they recognised they had a problem.
•
Over a third of women who suffer depression during pregnancy have suicidal
thoughts.
The NHS currently does not commission or provide any support for Dads, family
members or Significant Others who are expected to provide the support to those
suffering from postnatal depression … as insufficient research has been done!
Dads as “Carers”
The NHS Choices Website gives as an example a “a Carer” is “someone looking after a
person between mental health crisis”.
"As a new father, it was very difficult. It was time for me to learn everything.
• It's expected that 'you are the man' so you can manage.
• It's never about how you are feeling, it was all about her.
• It didn't matter what you did, nothing was good enough.
There was the new baby, we had a new house and all the added other pressures that
Michelle use to deal with and, most importantly, my wife's illness. I had to give up work
for six months.
The isolation was the biggest thing I felt hard to cope with. How was I going to tell my
friends if I didn't understand myself?
I was exactly like the people who still say "how can you be depressed" - with mental
illness, you can't just snap out of it.”
Mark Williams
www.fathersreacingout.com Fathers Reaching Out aims to help men who suffer from perinatal
mental illness and who are left responsible for caring for mums suffering from perinatal mental illness
The crucial role “Carers” play, whether dads, partners, family members or friends, must
be recognized by service providers…… even though NICE fails to mention “DADS”
Best Practice Treatment
National Perinatal Mental Health Project Report – A Review of Current Provision (2011)
Peurperal Pscyhosis
1 in 500 Mums
1,412
per annum
Severe Postnatal Depression 21,187
3% of Mums
per annum
Mild to Moderate
Postnatal Depression
10% to 15% of Mums
The Baby Blues
50% of Mums
84,750
per annum
353,124
per annum
Numbers based on 706,248 live births in
2009 and the agreed rates of occurence
Specialist Perinatal Mental Health Services
Mother & Baby Units
Specialist Perinatal Psychiatrists
Non - Specialist (PNMH) Services
Admittance to general psychiatric ward
Crisis Home Resolution Teams – “gatekeepers”
NHS Integrated Care Networks (Examples)
Nottingham, Southampton, Birmingham, Glasgow, etc.
Non-specialist services - lead by PNMH
Champions with support of GP’s, Midwives,
Health Visitors, Care Workers, volunteers, etc.
3rd Sector Support (Examples)
Family Action - support program & befrienders
Net Mums - online CBT & chat rooms
House of Light - call-line and drop in groups
Joanne Bingley Memorial Foundation raising awareness, training & education
Joanne’s Story: A Reason to Act
What’s Going Wrong ?
Presented by
Chris Bingley
Charity Registration
Number: 1141638
What’s going wrong?
 Why ?
 A National Scandal
 Mums and Dads at Risk
 Joe’s Pathway to Despair
 The NHS Response After Joe Died
 The Utter Devastation of Loss
 Support Following Bereavement
 The Independent Investigation
 The Coroners Inquest
 The “Lessons not Learned”
 The Francis Enquiry
 The True Costs of Failure
 The Consequences of Failure
 Why I am here
 Best Practice Treatment
Why ….?
Why Joe?
• Joe was dedicated and caring nursing professional
• Trained initially through Huddersfield Royal
Infirmary to qualify as a Registered Nurse and
then deciding to complete an Honours Degree at
Huddersfield University
• She spent 20 years working at Huddersfield Royal
Infirmary where she was Sister on day surgery.
• Her funeral attended by over 400 people included
ex-patients and many of her colleagues from HRI
• I felt all their eyes on me asking the same question
that I kept asking myself…
Why ?
A National Scandal
The death of Joanne (Joe) Bingley highlights a national scandal
Over the last 10 years, despite Ministerial promises, the development of NHS
Service Frameworks and NICE Guidelines the NHS has failed to commission
Perinatal Mental Health Services across more than 50% of the country.
• The Care Quality Commission has reported that 2/3rds of maternity
Services are acting unlawfully, failing to follow care quality standards,
• The Patients Association Survey found more than 50% of Mental Health
Services are acting in breach of care standards
–
–
–
–
failing to follow care quality standards,,
failing to employ the required specialist perinatal psychiatrists,]
failing to provide information to patients
Failing to monitor compliance to care stanfards
• 35,000 mums suffering in silence every year too scared to seek help (i.e.
half of all mums affected by mild to moderate postnatal depression).
• 86% of mums suicides whilst suffering mental illness are “avoidable deaths”
• 10% of Dads suffer from PND but the NHS provides no support
Joe’s Pathway to Despair ...1 of 3
• 2008 Previous termination, miscarriages and treatment for depression documented in
Health Visitor records – NONE of the 5 mental health risk assessments described in the
Kirklees Maternal Mental Health Care Pathway as the responsibility of Health Visitors
completed, in breach of care quality standards and safe systems of work.
• 18 Feb 2010 Emily Jane Bingley Born after 5 days in labour
• 22 Feb 2010 Breast Feeding problems – 1st Hospital stay with positive results
• 10 Mar 2010 Breast Feeding problems – 2nd Hospital stay
• The medical records detail Joe’s un-consolable crying, anxiety, feelings of failure and
the suspicions of Midwife she was suffering postnatal depression. But no clinical risk
assessments completed, no referral and no information given to patient or husband
• Treatment for her lack of hind milk and crying baby was to have Joe connected to a
milk pump between feeds with intent to increase milk production over 10 days.
• Treatment concentrated solely on the problems of Joe continuing to breast feed.
• 14 Apr 2010 Easter Holiday emotional breakdown
• GP diagnosis and starts drug treatment for Postnatal Depression and lack of sleep
• 22 Apr 2010 Suicidal feelings and intent – plans to drive herself and baby into a wall
• GP listens to options considered but ruled out as they would not guarantee death
• Mental Health Crisis Team contacted, diagnosis severe postnatal depression
Joe’s Pathway to Despair …2 of 3
• 22nd April - At initial assessment home care recommended as course of treatment
with no other treatment options considered or discussed. No written information of
any kind provided nor any information on support groups or how to care for wife.
• 23rd April - Care Plan provided to the patient and the husband marked as provided
to ‘The Carer’. But no information provided about ‘Carer Rights’ and no ‘Carers
Risks Assessment’ as required by The Carers Acts, in breach care quality standards
• At no point is any referral made to specialist perinatal psychiatric services or to a
consultant of any kind, in beach of care quality standards and NHS Frameworks
• 27th April – The Independent Investigation states that the clinical evidence
substantiate that Joe should have been hospitalised at least 3 days before she died:
Coroners Evidence regarding the visit by the Care Team that day:
When Joe requested “please take me with you” her request was ignored and brushed aside by the
care worker treating her that day. and Joe left the session in frustration (withdrawing from the
treatment). Despite Joe’s medical record detailing her suicidal plans, a decline in mental health
and her obvious state of anxiety the care worker never explored Joe’s state of mind even though
she admitted to recognising a break-down in Joe’s relationship with her husband.
Whilst sat in her car ready to leave, the husband (Chris) knocked on the care workers window to
explain Joe had left the property without telling anyone. Despite having recorded the husband’s
anxiety and distress in her notes, knowing his wife was suicidal, she told him to contact the police
if his wife did not return and then drove away!
Joe’s Pathway to Despair …3 of 3
• 29th April
• Mental Health Crisis Team Dr and Nurse visit AM – husband (The Carer) not
attending but patients mother in attendance:
• The Dr for the first and only time during the entire treatment records signs of
improvement, and decides there is no need to discuss alternate treatments
• Health Visitors visit PM - husband (The Carer) not attending but paternal
grandparents in attendance:
• Recorded high levels of anxiety, despair, inability to cope, her feelings that
mental health service wasting her time and her intent to withdraw from care
• HV contacts Crisis Team Manager who over rules HV concern and ignores risks
• HV raises her concerns of HV’s being unable to cope as she is told Crisis Team is
planning to stop providing support, and she contacts her manager to log risks.
• No-one contacts Husband (The Carer) to inquire of patients state or discuss risks
prior to the Bank Holiday weekend.
• 30th April 2010 - Joanne walks on railway tracks, throwing herself under a train
• 4th May 2010 - On first day back at 9:05am the Crisis Team Manager contacts the Health
Visitors, the medical records detail the purpose was to explain that at no time did Joanne show
suicidal intent else they (The Crisis Team) would have taken action.
The NHS Response after Joe died
•
Huddersfield Royal Infirmary
- Excess stamp duty to pay for
- Letter of condolences and apology for your loss
•
Mental Health Crisis Team Admin Dept
- Patient Satisfaction Questionaire
- Reminder to complete Patient Satisfaction Questionaire
•
•
Mental Health Crisis Team Manager in discussion recorded by Health Visitors:
-
Patients husband has family support so do not contact for 6 to 8 weeks
-
Support for Crisis Team staff and HV staff affected by Joe’s death was to be
organised through normal channels
Mental Health Crisis Team Director and Manager - in a meeting held in the patients
home with her husband and GP friend, prior to investigating Joe’s death:
“Guidelines are just guidelines we don’t have to follow guidelines”
“ These things just happen”
The Utter Devastation of Loss !
1 Corinthians 13: ….faith, hope and love; and the greatest of these is love !
• Love ….. your best friend is gone, taken herself away from you
• Hope ….. there is none, your dreams and plans destroyed
• Faith ….. shattered by the knowledge that these are “avoidable deaths”
When nothing is left what do you live for?
• Emily ….. Was too young to have a bond, babies just cry, eat, sleep and pooh!
• What do you do when there is nothing left ……. what would you do ?
Grief is a process ……. you have to keep going to get through it?
• Everything is dark, you can see no end, you have to find strength within you
• You find help … and follow a path …. until you find light and yourself again
http://www.uk-sobs.org.uk/
Support following Bereavement
Support for those whose life’s are left in tatters after bereavement needs to be
dramatically improved.
I had to learn for myself, without any NHS support, about the significant effects on my
daughters long-term development that are expected as a result of the trauma her
mother suffered and the impact it has had on her childhood development.
Emily is
•
12 times more likely to have a statement of special needs prior to age 16
•
More likely to have a diagnosis of depression prior to age 16
I also had to learn of the increased risk she will suffer the same severe form of
postnatal depression as her mum……… FROM 3% TO 6%“
Whilst there is a greater risk that my daughter will get knocked down by a bus at least
IF that happened the universal service across the UK will provide acute care within the
critical 60 minute window……. with PND > 50% of the UK has no access to acute care !
Survivors of Bereavement by Suicide
http://www.uk-sobs.org.uk/
Winstons Wish
http://www.winstonswish.org.uk/
The Independent Investigation
Due to time constraints placed upon the investigation by the NHS it was agreed:
• The investigation team was only able to review the clinical documentation,
policy documents and staff written statements and records, without the benefit
of investigators interviewing staff.
• As the NHS were unable to identify investigators in Midwifery or Health Visiting,
these areas were supposed to be reviewed and investigated at a later stage.
The Results:
21 recommendations and actions for change including:
•Specialist Perinatal Psychiatric Resource
•New strategies and policies compliant to care quality standards
•New and improved systems, processes and safe systems of working
•Provision of written information to patients and carers
•Mandatory contractual care standards and compliance measures
The Independent Investigation concludes:
“From the documentation there is evidence that Joanne Bingley should have
been hospitalised on the 27th of April 2010 at least 3 days before her death.
Further if she had been so treated would probably have made a full recovery”
Coroners Inquest
The criminal standard of proof beyond reasonable doubt, represents the evidential
hurdle or threshold that the coroner had to consider for suicide or unlawful killing. He
resolved to return a narrative verdict, and his 21 statements of fact include:
• A personal and family history of mental health problems as well as significant adverse life
events befalling her in the last 5 years of her life.
•
By the 22nd April her condition was such that she was referred to the Mental Health Services
who responded promptly. At and around this time she was expressing suicidal ideation, low
mood, anxiety and a poor sleep pattern.
•
At a meeting it was determined she could be treated at home. I have found as fact that no
discussion of other therapeutic options took place………informed consent has not been
obtained. (one of many unlawful acts)
•
Independent medical care advice commissioned from Dr Oates and Mr Ketteringham. I have
accepted their view that the possibility of admission should have been part of the initial
treatment care plan and discussed with the patient and her husband as a treatment option if
she either became worse or did not improve.
•
I find as fact that her health fluctuated and did not improve.
•
It is also their evidence that on the 27 April, if not before, there was clinical indication to be
admitted to a Mother and Baby Unit.
• It would follow from this opinion that if admission had taken place Joanne Bingley
in all probability would not have died on the date or in the manner that she did.
The “Lessons not Learned”
In December 2013, a little over 2 years after the Corners Inquest, the NHS Director of
Nursing from the NHS trust that treat Joanne Bingley finally admitted in a statement
issued into court that:
• In all probability had specialist perinatal psychiatric treatment been offered,
including the admittance to hospital in a specialist mother and baby unit, it would
have been accepted.
• Had specialist treatment been provided the patient, Joanne Bingley, would have
been expected to make a full recovery.
• Their (NHS Trusts) breach in duty of care was the probable cause of death
Joanne (Joe) Bingley’s death was one of many avoidable deaths every year.
The Independent Investigation into her death resulted in 21 recommendations for
improvement and the NHS agreed an action plan with her husband to implement the
“lessons learned” by September 2011.
In April 2012 the Care Quality Commission reported on the NHS Trust that treated Joe:
• Following complaints raised by the husband of a patient who had deceased
(Joanne Bingley) their investigation found the NHS Trust had failed to implement
“Lessons Learned” to acceptable care standards
• Women in this specific user group (mums suffering severe PND) at risk
• 2 other mums, being treated at home for severe PND, have since killed themselves
The Francis Enquiry
For the NHS to ‘place the quality of patient care, especially patient safety, above all
other aims’ we must have candour when mistakes happen and acknowledge all
medical errors.
•
Only 24 per cent of the 140 possible contributory factors identified by the inquiry team had been
identified in local investigations at the time of the incidents.
•
So 76 per cent of the learning from the incidents had been missed; a situation that there is an
urgent need to improve.
•
As well as the new statutory duty of candour, greater use will be made of incident data,
including a commitment for CQC to consider each hospital’s review of serious untoward
incidents as part of its pre-inspection activity.
•
NHS England is to launch a program of new patient safety collaboratives, which will be expected
to provide expertise on learning from mistakes and help to provide a ‘rigorous approach to
transforming patient safety’.
“Avoidable Deaths” cost the economy in excess of £300m every year….
But this excludes costs of NHS negligence claims as currently £18bn is spent on
fighting negligence claims, 1/5th of NHS Budget.
The True Costs of Failure
The costs of just one “avoidable death” like Joe’s would cover the costs of providing
all mums and dads with the information they require and the extra mother and baby
unit beds needed.
The estimated cost of the emergency response (£2m) and the economic costs of
closing the Trans-Peninne train line for several hours (£20m), hardly feels relevant
when compared to the widespread human costs.
Proper care would have cost:
15p for the JBMF information card for mums & dads
(900,000 *25p = £176,000 per year for all mums)
2p for the JBMF Severe Postnatal Depression checklist/leaflet
(22,000 @ 5p = £1,000 for all sufferers)
just £17,000 for the 56 days treatment Joe needed to live!
£318 per day for treatment in a Mother and Baby Unit Bed
The sad fact is each year there are up to 66 maternal suicides due to psychiatric
causes of which 86% are “Avoidable Deaths” (diagnosis and treatment was possible).
A single “Avoidable Death” such as Joanne Bingley cost the economy in excess of
£22m and cost the NHS over £1m in legal fees defending for 4 years the negligence
claims, irrespective of any payout after finally admitting to a breach in duty of care.
The Consequences of Failure
The death of Joanne (Joe) Bingley caused horrific trauma to her husband, to Joe’s family
and to her friends. But it also had a significant impact on the lives of many others.
Many of those who witnessed Joe’s body being torn apart by the train, her internal
organs being spread across the tracks, the blood pool that resulted and her upper torso being
dragged along the tracks, until the train came to rest. were traumatised:
 The 2 train drivers off work needing treatment
 The members of public, off work needing treatment
 The 7 year old child waiting on the platform to go to school
 And many other people who had to deal with the incident
All this suffering as a result of the NHS staff failing to obtain “informed consent”, failing
to provide access to specialist perinatal health services and failing to admit Joe to a specialist
Mother and Baby Unit, even though places were available at the time of her death in Leeds,
Manchester and Nottingham.
Following his wife’s death Chris was driven by his own grief and the despair to find out
answers to his questions Why?
At the Coroner’s Inquest the true consequences and costs of the failure to prevent what
was an “avoidable death” was brought home to me when told of the many others
affected, including the 7 year old child who witnessed Joe’s death !
Why I am here ….
Why ?
• Joe was a dedicated and caring nursing professional
• In 20 years working at Huddersfield Royal Infirmary
she enjoyed caring and treating those who were ill but
also cherished her time mentoring and supporting others
• There is a stepped change underway, back to the core
values of “caring” and “putting the patient first”
• It will take at least 10 years before significant
improvements are seen in the provision of Specialist
Perinatal Mental Health Services
• The 3rd Sector, Family and Mental Health Services
must work together to create the Integrated Care
Networks required to fill the gaps in mental health care,
“provide support for those suffering in silence” and
“eliminate the unnecessary suffering” and “prevent
the avoidable deaths” that devastate the whole family.
Best Practice Treatment
National Perinatal Mental Health Project Report – A Review of Current Provision (2011)
Peurperal Pscyhosis
1 in 500 Mums
1,412
per annum
Severe Postnatal Depression 21,187
3% of Mums
per annum
Mild to Moderate
Postnatal Depression
10% to 15% of Mums
The Baby Blues
50% of Mums
84,750
per annum
353,124
per annum
Numbers based on 706,248 live births in
2009 and the agreed rates of occurence
Specialist Perinatal Mental Health Services
Mother & Baby Units
Specialist Perinatal Psychiatrists
Non - Specialist (PNMH) Services
Admittance to general psychiatric ward
Crisis Home Resolution Teams – “gatekeepers”
NHS Integrated Care Networks (Examples)
Nottingham, Southampton, Birmingham, Glasgow, etc.
Non-specialist services - lead by PNMH
Champions with support of GP’s, Midwives,
Health Visitors, Care Workers, volunteers, etc.
3rd Sector Support (Examples)
Family Action - support program & befrienders
Net Mums - online CBT & chat rooms
House of Light - call-line and drop in groups
Joanne Bingley Memorial Foundation raising awareness, training & education
The Joanne (Joe) Bingley
Memorial Foundation
 Founders Statement
 How we help
 Parliamentary Commission into PNMH
JBMF – Founders Statement
Joanne, or Joe as she preferred to be called, was a nurse with
over 20 years experience. She was dedicated, caring and
diligent as are most health care professionals I have met.
But Joanne was let down by the very NHS organisation that
she gave everything to and just 10 short weeks after giving
birth to her much longed for daughter Emily, whilst being
treated for severe postnatal depression she took her own life.
“The charity exists to ensure future generations such as
my daughter have access to the appropriate care and
support, that services adhere to care quality standards
and to inspire sustainable change in the perception and
provision of maternal mental health services in the UK”
JBMF – How we help
How the foundation delivers it’s aims:
• Website and information leaflets - we provide information on what you
need to know so dads, grandparents and friends can help.
• We publish stories in national media, Twitter, Facebook and our
website to encourage open discussion and raise awareness
• Knowledge of ‘Best practice’ – legislation, care quality protocols,
befriender and peer support groups, self help, supervision, etc;
presenting at seminars and workshops to inform commissioners, dept
health, parliament, etc. on patient and service issues.
• We provide training & education workshops for professional health
care workers and volunteers
• We have supported research including:
• The Patients Association survey of Primary Care Trusts
• Kings College User Group
• Through links with MP’s and other organisations we inform NHS policy
makers and parliament of service user issues and expectations
• Supporting the Maternal Mental Health Alliance we work with other
organisations to deliver improvements in PNMH services.
Parliamentary Commission
Into Perinatal Mental Health
Proposed Scope and Terms of Reference: The inquiry will provide an independent
review and detailed investigation to understand and highlight policy areas and issues
Why? has there been a failure to implement Specialist Perinatal Mental Health Care Services
across the UK following parliamentary promises after the death of Daksha Emson.
Why? has there been a failure to implement “lessons learned” from Independent Investigations
Why? Dads and Significant Others are not recognised as Carers by NICE even though “Home
Care” is the primary treatment offered by Mental Health Crisis Teams
What? are the implications and costs to society and the economy:
• Mums - Unnecessary Suffering in Silence and Avoidable Deaths
• Dads - Suffering from PND and Caring for Partners
• The breakdown of Family Relationships
• Early Years Child Development
• General Public
• Businesses Productivity and Employer Costs
What? are the recommendations and actions to reduce “the costs to society and the economy ”
of the “unnecessary suffering” and “avoidable deaths”
Finally
Charity Registration
Number: 1141638
Uncovering the truth
“What I have uncovered about mental illness and the issues around it
during my investigations and enquiries is both tragic and shocking.
It is my hope and desire that by openly publicising the horrendous
treatment given my wife and I that other people come forward and
support my call for the implementation of the care standards and
“lessons learned” required to prevent such catastrophic Never Events
happening again.”
Chris Bingley
Founder
My Inspiration
My Inspiration:
• Anthony Harrison, Angela Harrison Trust , on asking how he coped?
“You make it through the grief somehow ……but the loss never leaves you”
• Dr Margaret Oates, author of the Independent investigation into Joe’s death,
on reporting the findings that Joe’s was yet another “avoidable death”
“It needs someone who has suffered to stand-up and shout out ……
.. people listen to patients with a voice….it’s a powerful voice”
• Katherine Murphy, The Patients Association Chief Executive , on completing
the survey showing the failure to commission services across over 50% of UK
“We need one voice …. professionals, charities and user organisations together”
• Albert Pike,
What we have done for ourselves alone dies with us;
What we have done for others and the world remains and is immortal
Why I am here …… Why are you?